Really Scared

[chefnancy]

Re: Really Scared

Leslie, most of the people at my center use the EMLA cream. With the cream, getting stuck hurts just about as much as getting stuck for a blood test. I have tried it without (ran out and forgot to get the prescription refilled) and the pain is substantially greater. I think the EMLA cream works for most people. If you decide to do hemodialysis I would encourage you to get a fistula (or graft, depending upon your vein structure). This is the gold standard dialysis access. Permacaths are prone to clotting and infections (and remember they are installed right next to your heart). Also you don't get nearly as good blood flows with a cathether and, therefore, you do not get as good dialysis. Your nephrologist can refer you to a vascular surgeon who knows how to build you an AV fistula or a graft for dialysis access. It takes 3 months or more for a fistula to mature, so if you require dialysis before the access is ready you may have to start with a catheter.
Everyone qualifies for Medicare once they are on dialysis. For some reason people on PD get it as soon as they start, while hemo patients don't get it for 90 days. The social worker at your center can explain the application process to you and help you with it. SSI (for people who haven't paid into the system) and SSD (for those who have) is not automatic, but if you are on hemo it is pretty certain. They have to determine that, in addition to being disabled, you are unable to work. Once again, the social worker can help explain these processes to you. I hope your tour of the dialysis center goes well.

[LESLIE]

Re: Really Scared

I went to the Diaylsis center today and spent 4 hours. I have to say it was very overwhelming.I imagine you get use to it. But I talked with the PD doctor and i thnk this is the way for me to go...at night in my home. I find it hard to be in a room with so many people, the lights and noise...it didn't seem that I would do well. They think I am a good candidate for hme PD at night. This way I can work and travel. My doctor is not for PD, he likes the regular way...but I would like to give it a try. I watched them insert a needle, i guess you would get use to that too...they were doing a buttonhole style and the people i talked to said those work best. I am just taking each day at a time and trying to research which would be best for me.

[annie]

Re: Really Scared

Leslie-

Those dialysis center visits can be a bit overwhelming. I think you will find that PD is much more conducive to the continuation of an active lifestyle. I am pleased that I chose PD, and lucky that I am doing well on it so far. Good luck to you, and feel free to ask more questions if you need to.

[lisadiciccio]

Re: Really Scared

HI Leslie...

My name is Lisa Di Ciccio.. I have been on PD for about a week .. this time.. I was on peritoneal dialysis 11/2007 til 6/2008 and was able to get off it by changing a few eating habits of mine,,, I was working full time back then.. which was good, not only for the medical insurance benefits, but also spending time with other people.. people that were positive and not just looking at me like I was about to die the next day...lol.... for me.. and I can only talk about my own experiences... i felt better while doing dialysis, better than when I wasnt but never as good as before I found out... I go camping, traveling.. ( on a plane, and by car.. YEAH) i do everything i used to do, just in moderation.. i dont run marathons, run miles, anything like that.. but I take my dog for a walk.. swim and live life...

tip : i use ostomy bags when i swim... the catheter tucks in it nicely, it is thin like your own skin... and it tucks in my bathing suit

[michael48439]

Re: Really Scared

I too was very scared back in July of 07 when the nephrologist said I would need dialysis. I avoided it for a year and a few months by using diuretics but in Nov of 08 ended up in the hospital with short of breath, lack of energy etc. I had a breathing issue so they put me on the intubator and while in the ICU they started dialysis.

I have been doing it for almost 6 months now and have been doing a lot of reading and educating myself and that has shown me that it is just a procedure that can extend your life. I did hemo unitl last month and the only negative for me was being exhausted the whole day afterwards (my appt time was 5:30am) I am doing PD now and trying to find the right schedule for me as I am diabetic and seem to absorb liquid if I don't watch the sugars. I am on 2000cc of fluid which seems to hurt and causes me a breathing issue especially at night and I am not sleeping well because of it. Eating is the biggie for me as my brain says i am hungry but the stomach says it is full. But as with everything I need to give it a chance and that is what I am trying to say.

Relax and just make sure you educate and communicate needs for you to the nurses and techs and they should provide you with a good support system.

Michael

[johanel15]

Re: Really Scared

HI
I am an active mother with a new grandbaby, and have just been told that within 2 weeks
I will be on diaylsis. I am scared to death..to the point where I don't want to even do it. I have a wonderfu job ( which I will not be able to keep ) I am so worried about money and all the costs. There isn ot one redeeming factor in this process that I see, other than I will live. But I read and hear horror sotries...from the needles are gigantic and are extremly painful and there is so mcuh blood loss on your clothes, to you feel even worse when you are on diaylsis than you do when you are off.
Right now, I am anemic, very tired and live with a lot of pain...if I still live like this on diaylis then why go on it.
Does anyne have any positive experiences. I talked to the manager of our Davita Center, and she was so up beat and helpful, but yet she is not on it...living with this sound horrible to me...a person who is so acative and out going...I feel so gulity that I am putting my husband and children through all this.
Any adivce ??

Hi!
My name is Ethel Centeno I have been on dialysis since i was eight years old. I had my child while on dialysis. I am 40 years old 3 transplants later I am still here! I know this may not be much , but, the needles you get use to. The only thing is your diet changes and the facts that now you must measure everything you drink! Its hell in the summer and hell in the winter.
I am so greatful to be here enjoying my time with my son.\
Ethel Centeno

[roscot50]

Re: Really Scared

Try not to worry. I was scared , also. First, make sure you are doing whatever your doctor tells you to take care of the symptoms. Get a prescription from him for some Ethyl Glycol Spray. It freezes the site for the needle sticks. It really helps. They will probably start with the smallest needle, 17gauge, and gradually move up to the larger sizes, maybe 14 or 15 guage. My experience has been one of little pain, much learning, nice naps, watch a lot of TV.Treat the people in the center with respect, and they will do the same for you. All of my techs have been very nice, and have a great touch with the needles. If you already have a mature access site, like me, you should have little pain from the sticks, after that, it's just sitting there, and doing whatever you want to do, except get up, eat, drink, do anything with your access arm. If you are at a Davita center, ask for a Davita Bag. It will have a blanket, pillow, headset, hand sanitizer, and some information that you should read. This is our lot in life. If you want to live, you'll find a way to put up with whatever you have to.

[jeffmoore]

Re: Really Scared

Hi Leslie,

I truly understand your plight, and the uncertainty you feel about your life surviving with dialysis. I have been on dialysis for over nineteen and half years, ten on hemo and now in my ninth and a half year of peritoneal dialysis. Now, don't get me wrong, it is amazing that I've been living on dialysis all these years, but I did have my trials and tribulations dealing with my polycystic kidney disease and dialysis. My access, which I had no choice but to have a graft for dialysis treatment, because I wasn't fortunate to use my original veins (meaning a fistula), and of course, I was told the life span for a graft is very slim, because they clot so easily. For over a decade I had four grafts, ((my arms, the upper arms, and my thighs), I had so many repairs that I had to result to peritoneal dialysis, and thank God for PD, because I had exhausted every graft that I acquired. I must admit I was quite devastated when I had to result to PD for dialysis treatment,because I had gotten quite comfortable with hemo, it had become a part of my life, but after having so much heartache over the numerous grafts that I have had, I praise God for PD, because it is so much less taxing on my body. I don't have to worry about the needle sticks, and using ethyl chloride (a solution that freezes the skin to minimize the needle pain. Leslie, you see when I started hemo dialysis everything was so much more different, and I see in the last fifteen years, things have gotten so much better, even the renal diet isn't as unfriendly as it use to be, you can eat so much more, and there are so many products that can help in enhancing the flavor of a renal diet recipe, especially Mrs. Dash seasoning blends, I use them religiously in most of my recipes, that I do share in a book that I self-published a few months ago. If you are interested, it is available online at xlibris.com, the bookstore, If you search (right sidebar), My Renal Life by Gloria Ann Jeff-Moore, you will get an image of the front cover, a brief description, and an excerpt of the details of the book, and my author bio. I even share my memories of my first day of hemodialysis. It may help you in getting a grasp of the renal world, and what to expect. I truly get deep into my dialysis life and how it has effected my personal life. I'm also a very good cook and I quite understand this very complex renal diet, and I invite my readers into my renal friendly kitchen to check out some of my renal friendly recipes, even easy cooking tips, and I also include nutritional facts about most of the recipes.
I hope it can help you to have a better understanding of what to expect when you become a dialysis patient for the first time. But Leslie, just remember no matter how long we have
been on dialysis, we all had a first time, so emotionally we had a lot to cope with. Just remember, Don't let the disease control you, you control the disease. Anytime you have any concerns, feel free to chat with me anytime on this site, or you can leave me a message at xlibris.com, (contact the author) O.K.

Bless You and Take care, and don't worry. If you learn everything about a renal diet, and take you medication as prescribed, you will live a long productive life, like a lot of us are and still are. I also share the education that I've learned and very much understand in my book.

Glo

[ddarling]

Re: Really Scared

Jeffmoore, thank you for joining, and becoming a part of our forum family. You seem to be very knowledgeable and educated in CKD. I am stage 4, pre-dialysis. I hope to prolong dialysis as long as possible because it really does scare the crap out of me. And yes, you are correct, this renal diet is very hard and confusing. I still don't understand how people stay healthy on this diet and don't end up with malnutrition.

[Marina]

Re: Really Scared

Hi Leslie,

the renal diet isn't as unfriendly as it use to be, you can eat so much more, and there are so many products that can help in enhancing the flavor of a renal diet recipe, especially Mrs. Dash seasoning blends, I use them religiously in most of my recipes,
Glo

Folks, I want to remind you that mrs dash is loaded with potassium (that's what gives it flavor), as many of us know a renal diet is low sodium, low phos, and low potassium. My advice, before you go out and buy mrs dash, ask your renal dietitian is it's okay for you to use.

I have to clarify, as we all know each person's diet is different according to labs. In my case my potassium is always low and I'm allowed 2-3 K foods, but some are on the opposite end of the spectrum.
Don't take your chances and check with dietitian.

God bless!!

Marina

[annie]

Re: Really Scared

Hey there.

I just wanted to clarify that Mrs. Dash actually doesn't have that much potassium (although many other salt substitutes do). . For example, the original flavor has 10mg/tsp., and the Fiesta Lime has 5mg./tsp.

So, you may be able to use it after all

I agree wholeheartedly with Marina that we all should check with our nephs / dieticians to be sure we are doing what is best for each of us.

Good luck.

[8sue8]

Re: Really Scared

Annie: I have only had one appointment with kidney doctor, but at low end of stage 3 now.
He talked to me about thirty min. and maybe since I'd already been here looking at what all of you had to say, did not mention how I was to find out all the information about home cooking and what things each item had in them other than me asking how I would know how much Phosphorus was in different foods. Easy to get how much protein in most foods, Not easy to buy unlabeled fresh foods that say content of anything. At what point will he suggest a dietitian or will he? Am 73 year old woman, but hubby cooks and he is 78 and then 4 days a week our son eats here with us. Pretty hard to turn their eating habits upside down same time as me, so I'm trying to read all I can on what foods have what in them to stay within diet, but would like to find value for food my hubby normally cooks. Any ideas? Sue

[wrwagner]

Re: Really Scared

Hi all,

I went on Mrs Dash website and looked at the potassium and it seemed within the range of the renal diet, but I too must echo that it is best to double check with your dietitian/neph to make sure you can have this item. Another way to 'test' this method is if you are in a position of having frequest blood work done, add only this new item to you diet and once you get your lab results back see for yourself how things went. You'll know whether you can use the item or not.

8sue8 - I hope you don't mind me jumping in on this discussion.

Here are two links that I use that help me to determine the protein, sodium, phosphorus and potassium are in the various foods:

http://www.nutritiondata.com/

http://www.ars.usda.gov/Services/docs.htm?docid=17032

Hopefully this will help you.

[annie]

Re: Really Scared

Annie: I have only had one appointment with kidney doctor, but at low end of stage 3 now.
He talked to me about thirty min. and maybe since I'd already been here looking at what all of you had to say, did not mention how I was to find out all the information about home cooking and what things each item had in them other than me asking how I would know how much Phosphorus was in different foods. Easy to get how much protein in most foods, Not easy to buy unlabeled fresh foods that say content of anything. At what point will he suggest a dietitian or will he? Am 73 year old woman, but hubby cooks and he is 78 and then 4 days a week our son eats here with us. Pretty hard to turn their eating habits upside down same time as me, so I'm trying to read all I can on what foods have what in them to stay within diet, but would like to find value for food my hubby normally cooks. Any ideas? Sue

8sue,

I agree with Wendy, both of those websites are very useful in determining nutritional values. You may also want to become a member of the AAKP (American Association of Kidney Patients). Once you are a member, they send you information, pamphlets, and recipes.


I do want to stress that if you are concerned about your diet, you should ask your doc for a referral to a RENAL dietician. This person can help you by providing information, resources, and diet plans that are specific to you and your dietary needs. Everyone is different. It is also important to remember that your family should not eat the same diet as a person with kidney disease.

Also, you don't need to necessarily turn everything upside down to feed both you and your family . I have found that it is do-able to cook "normally" for my family. I just tweak the recipe, amounts of certain ingredients, or serving sizes for myself. It is a bit of pain in the beginning, but after some time, it really does become second nature.

Please continue to visit us and ask questions when you have them, We have many amazing and knowledgeable members here.

[jennyc]

Re: Really Scared

Hi,
whilst everything was working well on pd i felt great, i worked we travelled. i have a 6 y/o old and hubby and i was able to keep up with them. i'm going over to home hemo now and i'm hoping it will be good.

i recommend taking charge of your treatment. I loved pd because i managed myself. i'm also going to do home hemo. yes i'm afraid of the needles but there is no way i want to be stuck at a center 3 times a week. also this way i can dialyse as much as i want (i live in Australia so we don't have to deal with HMO's my renal nurse and neph are happy for me to dialyse every 2nd day nocturnally for 7-8 hrs, and since i'm used to 8.5 hrs on the apd machine i can't see how it would be different).

Idon't get me wrong, i hate dialysis. some days when i have pms a feel like ripping the stupid line from the machine and smashing it when it beeps, but it does improve my quality of life so i have to stick with it.